Meniere's Disease

[SueR]

So says one person on the Internet. People are mis-diagnosed all the time. My son went to a world-renowned ophthalmologist who told me he had LCA (Lebers congenital amaurosis). I asked at every visit "you sure it's not ROP?? (Retinopathy of prematurity)". Nope. LCA.

Then when he was 5 1/2 yo, they said "we now think he has ROP, not LCA. "

A friend of mine was dx'ed with Ménière's but then another doc said he thought it was not MD but a virus. She took meds, now doesn't have a problem.

 

[Teri]

I have been working with an allergist and I am currently taking shots. She is a "country doctor" who specializes in allergies and has been in practice for over 50 years! She did not mention to me that allergies can cause hearing loss, BUT she did state that the congestion resulting from allergies can settle in the inner ear. Well...that makes sense that the hydrops and/or congestion would cause a drop in hearing. Just as having an ear infection makes it more difficult to hear.

 

[1MW]

allergies respond very good to corticosteroids so if you get 30mg methylprednisolone and you see
difference then allergy is very possible.

 

[SueR]

^ and then it's not Meniere's, but a temporary side effect of allergies.

 

[Teri]

I have been "down" the steroid road and had what I feel was a very bad reaction to the prescription. I had the worst congestion of my life! My head, chest, nose and ears were stuffed badly. I had a bad sore throat and chest. My hearing is still up and down but currently stabilized.

 

[Teri]

How is everyone doing?

@MichaelM .... I haven't seen a post from you in a while....which probably means you are doing okay. I sure hope so!!!!!!

I am same...same....but nothing I can't deal with.

 

[SueR]

I'm flying to FL again. My mom's heart surgery (an ablation).

Last flights to & from we sat in the front. That's because I had Aaron with me (he has disabilities, so they like to put him up front on Spirit Air. )

I'll be flying alone and only open seats are in the back. Feltotion sickness the last few times I flew. I don't remember what I'm supposed to do. Is it meclazine and a decongestant?

 

[MichaelM]

@Teri Hi there. I am here and feeling OK.
I have been taking a break from this forum. Too much is too much.

Been thinking about a trip to New York next summer. Gotta sell my scooter before that... haha.

 

[Teri]

I can't help you with this, Sue...not sure.

I hope all goes well for your mom.

 

[AnnaW]

So says one person on the Internet. People are mis-diagnosed all the time. My son went to a world-renowned ophthalmologist who told me he had LCA (Lebers congenital amaurosis). I asked at every visit "you sure it's not ROP?? (Retinopathy of prematurity)". Nope. LCA.

Then when he was 5 1/2 yo, they said "we now think he has ROP, not LCA. "

A friend of mine was dx'ed with Ménière's but then another doc said he thought it was not MD but a virus. She took meds, now doesn't have a problem.

what was the virus and meds that your friend took?

 

[SueR]

she didn't say.

 

[AnnaW]

ah ok thank you for replying.
i know antivirals have been trialed for meniere's, but like everything with mixed results, probably becuase not all meniere's is caused by the same thing.

 

[SueR]

the anti-viral she took was oral... but that's about all I know. I'll see if I can find some answers.

 

[AnnaW]

I think some poeple seem to be helped by antivirals and i think the JOH regime promotes this mechanism. It doesn't sit with me - mainly becuase I took two courses of antivirals and I was terribly ill with vertigo during and after the tablets. It felt as though they weakened my body greatly. They have negative side effects on the kidneys, and seeing as kidneys play a massive role in controlling fluid/electrolyte balance it seems likea good thing to nourish and protect the kidneys and not tax them with drugs. Just my take on it. And is it seems everyone has a different experience and likely different cuases of their meniere's.
I have been discovering some people it is caused by a pituitary dysfunction caused by head injury, some it is secondary to another condition such as autoimmune thyroid or celiac.

 

[AnnaW]

Not sure if this is best place to post but as its the meniere's thread

Here is a survey for both healthy and meniere's people to complete - only takes 5 mins

http://www.menieres.org.uk/news/entry/90/motion-sickness-survey

thanks in advance

 

[Teri]

I completed the survey......now I am interested in viewing the results.

 

[AnnaW]

yes, the menieres society are funding quite a few small scale studies atm. One of them is analysing the data from the meniere's symptoms app to see if there is a correlation between air pressure and symptoms - so many people report this but it has never affected me.

 

[SueR]

my H has been heightened lately. I had a headache for 2 days, and figured the H would let up after the headache left. Not yet. I'm watching the TV with the volume at 3 and my right ear sounds like a wind tunnel.

I hope this isn't my new norm.

 

[Teri]

OMG @SueR ! You can hear the tv at a volume of 3? You must have super sonic hearing! My hearing loss doesn't allow me to hear the tv any lower than 12 and that is sitting pretty close. If I am at a distance, I have to have it up to about 18 or 20. YIKES! My headaches cycle around. I have been taking Ibuprophen again. I had to stop with the onset of T because the Ibuprohphen would cause the T to spike. It does not seem to at this time....but I am careful not to go over 800 mg in a 24 hour period.

@AnnaW Air pressure definitely affects me.

 

[Teri]

...does anyone know of any device that can be used to help those of us with hearing loss to hear the tv at a normal volume? My family cannot be in the room with me when I need to hear the tv. When we are watching a movie together, I just have to watch without hearing the sound. With the genius generation of "techie kiddos" coming into the technology market, there has to be some device that I can use that works. I should clairfy that I do primarily hear the sound, I just can't discriminate the words well.

 

[SueR]

No I can't really hear it. I tried the closed caption but it wasn't in sync with the video. And there were a ton of mistakes in the words. I can make out some words but miss a lot. My hearing in the left is normal (but with some T) and the right is garbled and bothersome.

 

[Teri]

I have most loss in the left ear...the right is better.

 

[AnnaW]

I watch with subtitles, i dont like to TV too loud, but i cant understand what people say.
You can download subtitle on tinterweb, im afraid my hubs does this tho - i dont know how to do it

 

[SueR]

we have the feature available on my TV, but too many errors and out of sync.

 

[AnnaW]

thats annoying isnt it, you'd expect in the age of technology and all!

 

[SueR]

ugh... I have asked my boss if they could turn down the sound system in our offices. Starting Friday, they turned them up and it's making me sick.

The sound system is a masking sound for privacy in the offices. You aren't supposed to really notice them, but I'm not the only one complaining that it's too loud. and it's making me sick.

Starting friday, the sound was really getting to me, and by noon I started feeling queasy and got a headache for 2 days. We had a snow day yesterday, so worked from home. Today, I come to the office and it was the same thing. I'm feeling queasy again and headache has started. I am having trouble just talking with people.. it's distracting, irritating, nauseating....

I just need to hang in there until Brian comes out from an office with a closed door, and he'll turn it down.

until then... ear pressure, headache, etc.

btw... it's low 50s on the dB scale. That's just the sound system, no keyboard clickety-clack, no conversations, etc.

 

[Teri]

Oh, Sue. This is not good. I feel for you. Sounds can put me into a tailspin as well. I typically can get out of a bad sound situation, but with work, you really don't have much of an option.

I am so sorry, friend.

 

[SueR]

I never thought that dB level would bother me, but it did. It was really stressing me a lot. I'm also not used to that kind of stress. Trouble having a conversation, someone in my office and I couldn't wait for her to STOP TALKING (and I've NEVER had that feeling before with her in my office.)

and ear pressure, and the yuck feeling. all because of the white noise.

They turned it down and it was instant relief. The lingering effects are still being felt, but it was an immediate difference.

 

[SueR]

If they had said "too bad, we ain't changing it!" I would have given my notice. and I LOVE my job.

but they are sympathetic to my situation. and "normal hearing" people were complaining.

 

[Teri]

I am glad you have supportive co-workers. Loving your work makes all the difference.